The Stress of Meeting a New Doctor When You Have Chronic Pain

The Stress of Meeting a New Doctor When You Have Chronic Pain

By Ellen Lenox Smith

I always enjoy meeting new people and having the pleasure of learning about their lives. However, when we are heading off to meet a new doctor, all that goes out the window and I instead begin to feel stressed about that first conversation. I know the appointment will include forms, not enough space to fill in my diagnosis, surgeries, and food and medication reaction list, for example, yet understanding this will all have to be questioned and discussed.  Also, after not being diagnosed correctly for fifty-four years and then facing most in the medical field have little knowledge of my condition called Ehlers-Danlos Syndrome, I have had too many experiences of not being listened to, believed, or having one showing interest in trying to help me. So, I tend to start off feeling skeptical that this will just be another waste of time.

So welcome to the life of those of us living with complicated conditions. After addressing twenty-four surgeries, my poor husband now steps out of the room during a new doctor’s appointment. He just finds it too painful to hear that review again all the horror we have had to face and learn to overcome. But what about me? I never have the luxury to also step out – I have to be there and review it all and answer the questions. But believe me, I wish I could also step out and not partake in the needed medical exchange.

We are about to go meet a new specialist for the jaw. I hear he is dedicated to those of us with EDS and a wonderful, skilled, compassionate person yet the stress is still in me thinking about meeting him. I would love to run away from this appointment and pretend I don’t need his help. I don’t want to be reminded of all we have gone through and it will have to be reviewed and discussed. But I need his help, so once again, it is time to grow up and get through this and use a more positive attitude!

Suggestions on how to get prepared:

  • Arrive with a list of what you need to ask or address
  • Arrive with a paper to take notes on and a pen that works.
  • Arrive with your medical information organized to draw from
  • Arrive planning on staying on track with what this doctor can help you with instead of getting off tangent and dwelling on issues they can’t take on.
  • Arrive sounding as educated as you can about your medical issue and what you need for help from them.
  • Arrive with an open mind
  • Arrive with the hope this person will be of help in your journey!
  • Arrive – don’t run away, even if you feel like you want to.

May your appointments be pleasant and met by one that wants to listen and try to help you. May you not be judged and instead be respected. It doesn’t seem like too much to ask, do you think?

May life be kind to you,

Ellen Lenox Smith

Ellen Lenox Smith

Author of: It Hurts Like Hell! I Live With Pain– And Have a Good Life, Anyway,and My Life as a Service Dog!

 

 

 

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Ron Cope

Very good article, thank you for posting.

I would also suggest one small thing re: meeting a new alleged provider; bring a bottle of water with you. The anxiety is miserable and it’s hard to explain what needs to be said with a dry mouth.

Audrey M. VanGessel

Thank you so much

ElizabethR

I actually have a positive to report in the midst of the current climate many long term pain patients are facing. Today I met my new PCP–and it went well! I was prepared for the worst, but she treated me with respect and kindness as we reviewed my ongoing, incurable medical conditions and medications. She did not cut me off or suggest a forcible taper. (I have been taking low doses of a mild opiate and a short-acting benzodiazepine, responsibly, for a number of years).

Prior to the appointment, I prepared a summary of my current meds, including vitamins and OTC drugs, as well as a list of all the medications and alternative therapies I’ve been required to try since the “Guidelines” went into effect in 2016. I think that may have helped to show my new doctor that I was invested in maintaining my health and had tried many non-opiate-based approaches.

As my earlier post indicates, I had been totally stressed out for the entire week preceding this appointment. The change was evident in a 20-point drop in my blood pressure readings between the start and the end of the visit.

I wasn’t punished for being in pain–what a concept! I can only hope that sanity, common sense and empathy will begin to prevail for ALL of us.

maxlet

Jonathon B;
I saw a wonderful neurologist for many years for my intractible migraines, & for much of that time he also worked at a teaching hospital. After being practiced on by dozens of med students, I was sick of them. And then one med student in particular was incredibly abusive, & when my doctor came in for his portion of the visit, he found me nearly homicidal with rage. He then put a note prominently on my file saying I was NOT to be used as practice by the GITs (Gods in Training). In the next few years, they only messed up on that once, or maybe twice. It might help (if you’re comfortable enough with your regular doc) to ask that you be taken off the GIT practice rota. I don’t guarantee that’ll work, but if your doc is any good at all, they should be aware that the guinea pig routine is actually further damaging your condition(s) & be willing to stop exacerbating things. I hope. Wishing you luck!

ElizabethR

Although not in as difficult a situation as Ellen’s, I can relate to this! I have a first appointment with my new PCP this Friday and I’m already fearful and shaking at the prospect. She’s young–in practice for only 3 years. Does she think all opiate medications are “bad”? Will she cut off my low dosage of a mild pain med completely or want to forcibly taper me? Will she listen to the person who has occupied this body for 82+ years? Will she understand or care that I was once young, healthy, active, a member of the workforce (for 57 years, mostly F/T) and enthusiastically involved in life?

All I ask in old age is to remain as functional as possible despite several incurable health issues, retain some quality of life and not be abandoned to survive my remaining time in increasingly severe pain. I plan to bring to the appointment a list of “alternative” treatments and non-opiate medications–there are 14–that I have already tried.

Undertreated pain has already stolen 90% of the joy from my life (slightly stronger medication could restore some of that but I dare not ask for it, of course, since that would result in an instant new label: “addict” or “drug seeker”). I need to remain on my present medication, at least, to live independently and care for myself, my near-90 Y/O spouse and our 2 senior cats. Will the young physician I will meet on Friday, who is in the prime of her life, be able to relate to me at all? My quality of life (and possibly my life itself!) rests entirely in her hands, so I must sincerely hope that she will.

Still, a larger question remains: what kind of society have we created where a compliant, long-term pain patient actively FEARS and dreads meeting her new doctor and where being open and honest about health issues, including pain, is likely to be PUNISHED?

Patricia Haynes

I was sent to a “pain management” clinic after being refused pain medications by numerous physicians in the small town my husband I moved to. We moved to down size and get away from steps and other hazards of our long term home. We’d researched the area and had been told the health care was exceptional for this area. So wrong. I worked hard at trying to keep to the pain management clinics rules of no alcohol, no poppy seed muffins and other strange rules until I got very sick. I took NyQuil for re-accruing sinus infections and horrid allergy attacks. I was thrown out, discharged and told they would no longer prescribe my pain medications since I had nanograms of alcohol in my tests. Due to the move I’d already been forced through two other withdrawals. First time from almost 20 years of methadone in less than 3 months. Second, three months of Percocet. Withdrawal number 3, I’m currently sicker than I’ve ever been. Trying to take care of myself and live with the pain, as well as the brain fog, neuropathy, the exhaustion and other horrors related to withdrawals. I’m now wondering if any of this is worth it? I had a life, now I don’t. I guess what confuses me is if doctors are supposed to care about their patients, how can they refuse to provide a person reasonable care? Especially with a diagnosis sheet that reads like an injury/surgery/medication history over 20 years long? Where’s the humanity in that? This CDC thing is ridiculous, dangerous and now beyond harmful. I’ve taken care of other people my entire life and now I can’t take care of myself. Pitiful. I’m not just speaking for myself here. Everyone I’ve spoken to at the Pain Clinic in the past tell me the same stories. They also talk about how they are made to feel like drug addicts, criminals and stupid fools. Is this how we want to remember our senior years? Where are the civil rights attorney’s and the law suits? Why aren’t we taking bigger steps to change this? Hit them in the pocket books.

Linda Olds

I understand. I don’t like meeting new doctors either. I even get nervous every time I see a doctor who I know and like. There’s always the fear that meds will be taken away, or that they won’t understand me.

Bruce Stewart

I just became acquainted with a long lost cousin who I’ve found out has Ehlors–Danlos syndrome. Apparently her mother was a carrier of the disease. She has a lot of money but also a lot of pain. And I have neuropathy. Terrible situation. Thank you for this update, we all feel the same when we deal with new doctors.

Louise Chereski

I know, know what you’re talking about,.
I fill out the new patient forms, but when do they read them?

Holly

I have been to 3 different pain Dr.s since the guidelines came out. I was treated like dirt! One that I saw….from the moment he came in the room, he started drilling me about who gave me the meds I was on and proceeded to tell me they do not prescribe what I was on. Every record of my conditions and my list of meds were sent weeks prior to my first visit. Not one person had the decency to call me and tell me this before I wasted what little energy I have getting ready and driving an hour from my home.
The Government has ruined Dr./patient relationships!

JAnice

In spite of how we individually all feel chronic pain patients are treated so wrong by our doctors insurance etc, do we really want our government involved in our” universal health care” . Seems like that” universal health care ” concept can go down a showmen road of not what’s good for chronic pain patients. A legislative push for rights for those who are patients under insurance or not . Directed towards better behavior of doctors insurance companies etc . As well as ethical and fair treatment of patients. Praying for all chronic pain and suffering to end.

Cynthia

Each doctor that I’ve seen has let me down. One way or another. Often, I try to get them to understand that I’m interviewing them, as much as they are interviewing me. Then, if i determine that the doctor is not the right one for me, angry notes will be put in my file and I will be accused of doctor shopping. They are quick to get my insurance information. But, not as urgent about getting my treatment right. The attitudes at the front desk rival those of the doctors Judgemental and unsympathetic with power hungry God complexes. The nurses act like parole officers. I try too keep my cool but I am fractured and exhausted. Begging pleading and crying are the side effects of my fear. I stick to the paperwork and try not to say the wrong thing. I am sorry if I weep. Sometimes I can’t help but breakdown at the office. Mostly, out of fear of their intention to withhold medication and treatment. I wish that l could let them really look inside my body to see my illness in all its fury. Trade places with me, doc. And go home with my misery, for just one night. Just to see the look on their faces the next day. Full of anguish and distraught. Then, they would understand my vulnerability. Give me injections, blocks and break out the voodoo doll. Make my broken body jump though hoop after hoop. I am willing to try anything that they recommend. But, unless your willing to feel the same pain that I experience, year after year, break out that damn prescription pad and put me out of my misery!

A very excellent article that applies to every intractable pain person. We are called complicated or complex and when you hear those words you know it’s going to go no further to finding what your issues are or even the ones you’ve been dealing with in the past to the very same doctor, much less a new one. I’m to the point I’m not going to any more Physicians unless I have a scheduled regular appointment for follow up, I’m not going for any blood work test anymore to check on anyting. Unless it’s broken I’m not going. I don’t think Physicians can fix anything unless it’s totally broken and it’s very obvious. I can even tell that the PA s and the Physicians don’t even skim over your medical records when they come in to see you they barely just catch your name. I have accepted the fact that we’re all going to die of something and I’ll just deal with what I have the best I can and some of it does deal with couple of doctors that already know the issues. Some of the Physicians I feel milk you coming in because there’s no reason for you to come in that often because it’s not a life-or-death issue. When I did have a life-or-death issue I couldn’t get any of them to listen to me. LOL

Katie Olmstead

These are all helpful points! One thing I’d add is that, whenever possible, I ask for the paperwork to be emailed or mailed to me ahead of time. It is much easier to be able to look up my own records on my own time. It is painful for me to use my right arm and write, so I do it bit by bit, or better yet, when possible, I ignore their forms and attach my own history of surgeries and procedures, medications, anything that I already have typed up.
One thing that I struggle with is how I come across. I know that I look perfectly normal and healthy, even vibrant, especially when I am out of the house, even more so when I am meeting someone. My friends coach me in crying! Not being out of control but how to show that I am really hurting. I might laugh but that may make them think I am not in that much pain, that it isn’t a big deal. This is hard. How do I present myself in such a way that this new doctor will believe me? I am so used to appearing normal, which we know, takes LOTS of energy. I’ll leave that appointment and need to sleep for an hour. But it is very hard to let down my shield. It’s something I struggle with.

Ali

Why are Opoids such a target for compliant intracable chronic pain patients? They are a medication that is helpful and can be taken appropriately. Such a fear in our government agencies because they can’t control the cartels and drug addicts. When a medication is seen as a addiction any patients taking them automatically become addicts.
Government agencies are misguided and have mishandled there power to profile physician’s, patients, and the medical care field causing a huge travisty of Injustice to the COMPLIANT Intracable Chronic Pain patients.
They took Opoids and translated the COMPLIANT Intracable Chronic Pain Patient into street drug addicts causing profound depression, fear, bullying, loss of medical care, loss of physician, loss of medical support, and stripped them of any dignity that has led to Suicides the collateral damage from this negligence.
Being stripped, torn from a physician, and bullied into another physician causing profound fear and depression for future care is a travisty of negligence from our government agencies.
Opoids are a medication that has been used by thousands appropriately and not one government agencie saw this as a positive action by these courageous patients but profiled them into street drug addicts.
Government agencies are degrading themselves by placing the blame on physician’s for this travisty of Injustice negligence.
We Compliant Intracable Chronic Pain patients are so profoundly weak, tired, and in fear of medical care that some have resorted to suicides. These suicides are collateral damage from the CDC and other government agencies
guidelines that are severely lacking in the knowledge of the COMPLIANT Intracable Chronic Pain Patient. Since the meetings to listen to us there have been no response changes to help the COMPLIANT Intracable Chronic Pain Patient. All is unchanged in the medical community.
This article is proof. Only compliant intracable chronic pain patients pain centered life is becoming a living hell.

Jonathan B.

Thanks for sharing these thoughts – you’ve offered extremely useful advice. However, I’d like to suggest that this is a great guide as to how we should generally try to approach medical appointments with our chief providers. Personally, I suffer quite a lot of angst (no….more like extremely high levels of anxiety) prior to every appointment I have with my primary CRPS doctor/practice/office. My primary treatment is at a teaching facility, so I’m never sure exactly who I’ll see during any appointment. This uncertainty, coupled with underlying physiological and psychological changes resulting from the CRPS disease process itself, as well as any genetic predispositions to anxiety, always make the 2.5 hour drive to my medical provider a very stressful one. Add in that portion of anxiety secondary to insomnia, secondary to chronic pain, secondary to trying to maintain performance at work…well, it is VERY stressful for me. I’m actively considering how to lessen my overall stress load, but it certainly can be extremely challenging to effectively do so…even after I’ve stared this devil in the eyes for 1,038 consecutive days (started on 8/23/2016).

Denise Bault

I feel the same way, although after seeing 31 doctors in the last 10 years, you’d think that would change! It hasn’t. Great advice too, thanks!

Jeffrey Appollo

Thank you. I appreciate your willingness to share your experience. I also have had over 2 dozen surgeries in 7 years and cut on more than 30x. At present I am trying to prepare for 3 more surgeries and at the same time as you stated also the agony of trying to find a NEW PAIN MANAGEMENT TEAM. It’s over whelming first one needs to find out about insurance, your needs and if they are even willing to just seeing you. After being with same pain doctor for 9 years he told me to go elsewhere and said nothing but your problems are never gonna end. Refilled 1 months worth of meds and bye. Things are extremely difficult and getting worse for ALL OF US. THANK YOU, AND MAY GOD BRING SOME PEACE TO US AND OUR FAMILIES. JEFFREY APPOLLO

Terri James

Excellent points Miss Ellen. After forty some years I finally found a compassionate caring human being that came with the title of physician. He was literally an answer to a prayer; as a matter of fact he was an answer to many prayers from so many people and several churches alike! Just the other day I had to have lab work and had my little girl with me. She had her stuffed toy with her and told me that it wasn’t feeling well could he possibly see her bunny? I said well let’s just go up to the front and ask. Lo and behold the sweet young man behind the counter said just a moment please and I will see. What do you know, my sweet doctor took time out of his busy day to see a little girl’s sick toy and to make her day so much brighter! I do wish everyone had the doctor I have for he is such a compassionate human being with a heart of gold. From what I’ve heard he is also one of the most educated physicians in the Tri-City areas as well. Your list is excellent although I think prayer needs to be added as one of the focal points, perhaps even taking your Bible with you to read before the appointment. Faith does not make things easy, it makes them possible. Yes ma’am, at times I know it’s easier said than done although it is so worth it! I know that’s why God gave us friends, for when our faith falters that’s when we ask others to pray. May God continue to bless you for helping so many others! 💖

Renee

It’s hell finding help for pain. I’ve been searching for 14 years without success. CRPS is a true nightmare.

Laurie

After losing the best neurologist of my life for nearly 20 years, I got dumped with a bully.
He took control of the conversation from the start. He didn’t even read my chart and seemed to never have progressed beyond what was known about my condition in the early 90’s!
I was able to hold my ground, but I finally couldn’t take it anymore. I have tried to get referrals to other doctors but they all are afraid of the DEA.
So, now, I have to figure out where to go to get my Botox injections. He never seemed to keep records nor asked what worked and what didn’t.
I felt like I was going to a bad mechanic and after that first meeting, was always apprehensive.

The worst part of the Dems debate last night was the uniform acceptance of this War on Pain Patients and doctors.
Gads! what a cruel country we’ve become

Cindy

One last thing that I forgot to mention, and for some reason, there’s no way for me to edit my now-posted comments.

As to that fee that I objected to about Rx’s, I made a note on the form about that I don’t agree with it. I don’t remember exactly what I did, but I suppose I deleted the sentence and initialed it.

From now on , for a new doc, I plan to get there much earlier than they suggest, in case there’s another situation of way too much paperwork.

And please, read the paperwork you are given.

I don’t read the standard Medicare etc forms each time b/c they are gov’t regulated. I read them once. Now I just glance at them quickly. But any forms unique to your doctor, be sure to really read them.

Cindy

Continued from my first post –

I want to warn people in case they encounter this —

One of the forms at that office was about that they own their own MRI facility which they recommend patients use for quality etc. I was uncomfortable with that — conflict of interest given that MRI’s cost a fortune.

When I got home, I googled to see if that was legal, and it is, BUT certain requirements must be met such as disclosing a certain number of other MRI facilities within a certain mile radius. The form I signed followed most of the legal requirements, but not all of them.

I used the radiology place I’d been to before b/c I knew they were excellent quality — my SO took his results from that place to MGH and his MGH team of docs was really impressed wtih the quality.

Even though I used the facility I preferred, I was nervous that, since i didnt’ use my doc’s MRI place, that he wouldn’t like me and wouldn’t treat me as well as he would otherwise. So far, I dont’ sense that, but who knows.

Oddly, I just had my bi-annual bone density exam, and that machine is in my GYN’s office. I’d never encountered that with other GYN’s and it never occcurred to me that maybe it’s troublesome until this time, after the issue with the neurologist. But I worship my GYN and would never leave her.

I don’t know if any of these issues are customary for FL, where I’ve been only for a few years. I never had any such issues in Mass where I lived for several decades. ANd I”ve always been a high utilizer; tons of medical problems.

Cindy

Ellen, I so admire your fortitude — that you do anything other that your basic daily chores like eating and trying to stay clean.

And your husband’s — that he has stood by you thru all this. Lots of partners can’t handle it or don’t want to — it’s not what they signed up for and they want a partner who can be more active and fun.

ANd, why is it that forms in doctors offices NEVER have enough room to list all our conditions? Especially as people age, the list gets longer, even for people w/o complex horrible problems.

ANd why are forms so different from doctor to doctor? A few months ago I saw a neurologist for the first time and it took me an hour to fill out the zillions of forms. I have been to zillions of doctors and have never seen anythlng like it.

The person at the desk was shocked when I mentioned it, but I actually read it all which most people do not apparently.. She was also shocked when I asked her about the written policy that if you need a Rx refill w/o an appointment, they charge a fee — I think it was $25 but am not sure. How totally obnoxious is that!!! Anyway, when I mentioned this to the front desk person, she was surprised; didn’t know about it and said they dont’ do that. But they do charge $25 for something else that involves a bit of paperwork — and while I understand that doctors drown in paperwork and this fee wasn’t nearly as offensive as the other, I’ve never seen that before.

Michele

You hit the nail on the head with a sledge hammer! Thank you for saying what most of us feel.

Walter Strickland

Part 2-on this surgery I just had ,they had to open the pathway for my spinal cord.Involved removing the top portion of the c-3 through the c-6 to be able to clean as much of the osteoarthritis they could,remove 3 clusters of bone spurs.Also the spinal cord was almost flat in about 1/2 of that area.The surgeon made me feel like I was just a drug searcher.I had this first surgery done because of the constant risck of getting paralized.the next 2-surgeries will be to remove and replace the desiesed discs in the c-3 through the c-6.Will involve metal work and screws to hold all in place.So I am sure will have the same no post op pain relief prescription from the doctors or the hospital.So yes I do know how you feel when they treat you like a drug seeker,when in reality just need to have better relief from the post op pain.

Debbie

Excellent article👍🏻!

Walter Strickland

Thanks Ellen for putting in writing how we feel.I just had Cervical neck surgery,c-3 thru c-6 to clear the opening for my spinal cord.while getting ready to leave the hospital I ask for post op medication.He said since I go to a pain management doctor it will be up to the hospital and my pain management doctor.He would not prescribe any to me.Said that he would only prescribe a portion of what I am getting thru pain magement anyways so he will not prescribe anything additional for the post op pain.I still have one maybe two more surgeries to go on the more extensive work that needs to be done.i have acute degenerative discs desiesed and acute chronic degenerative osteoarthritis.i live in Houston Tx.I take one 30 m morphine sulfate every 12 hours and have 3-10 / 325 a day for break through pain / approximately 105 MME’s.This post op pain will make it very close to having enough pain medications to last to my next pain management appointment.

James McCay

Excellent topic Ellen! Thank you so much for this post.

Please excuse any typos; I have MS symptoms from my Advanced Myasthenia Gravis. My mind tells me to type one word and my fingers type another (or wrong letters) totally out of place??? SPELLCHECK doesn’t help much! These diseases of mine just keep getting worse & weirder and we have to FIGHT for the medication that keeps us from killing ourselves? I’LL NEVER GET THAT!

I used to bo be the polite, professional, always 100% truthful patient untl my hospital of 8-years with Pain Management went bankrupt (Wyckoff on the Bkln/Queens border NYC) & they permanently discharged ALL “complicated” patients with their new Administration they put in place without informing anyone!
My Myasthenia Gravis with Hyperthymusism automatically made me “complicated”. I was one of the 1st to go! They wouldn’t even give me a chance to speak, or referrals. Just “BYE” & a copy of copies of Methadone Clinics (for drug addicts- I’ve NEVER been on Methadone for anything but long-term excruciating pain) that couldn’t be fixed (doctor’s words)!
Then when I called the Patient Advocate (who uses caller ID) they wouldn’t even pick up if I called. This is when I 1st learned something VERY BAD was happening to Chronic Intractable Pain patients due to no fault of our own. IT DIDN’T START IN 2016!

I have 16-years medical training (which smart doctors used to love!) and I forced myself to be extremely truthful & I never exaggerated (we can’t do that anymore!). THEY FORCED US TO BECOME LIARS??? In 2010 when my hospital went bankrupt & another hospital bought them out- my former “good qualities” suddenly became DETESTABLE overnight! How can anyone prepare for that?

This is the ONLY place I can come where the daily topic mirrors what I’ve gone through at one time or another in the last 18-years. This site makes me feel comforted that it’s “not just me” because that’s where our minds tend to go. THANK YOU ALL!

Yes very stressful not only to have the appointment
drug test and have the big discussion about my excruciating pain that I live with on a daily basis but it’s a 2-hour travel to appointment and back home and knowing not if that will be my last day I will receive my prescription! S T R E S S !!!!! Yes!! I was a victim of a drunk driver at 16 now At 61my body is riddled in pain, kidney tramura arthritis eating my Bones, talk about stress

Jody Hoffman

If you have been through this so many times why are you making it so difficult? I have a file with my last PFT results & CT scan and my doctors report & my medication list. I hand them over as soon as we sit down. My wife is in the room the entire time & helps to keep things in order & to get it across to the doctor just how hard it is for her as well as myself when I have a flareup or collapse a lung. If your spouse is too fragile to hear the run down of how sick you are & have gone through then it’s better for them to not go in the meeting instead of walking out & giving the impression that they are not part of this & are tired of hearing you pleading for pain meds again. No wonder doctors are tapering off or stopping opiates completely, they have 30 minutes to get the information and make a diagnoses to justify their actions of continuing with the opiates. Think about what they are faced with & quit thinking that you are #1 with him because you are not he has 20 other patients and at least one is a terminal case in end stage and beyond treatment except for pain meds. I have been starting to get a clear picture of this opiate epidemic & I think that a lot of patients are at fault for their actions and attitude

Rebecca Payne

Thanks for this article. Yes, meeting with new doctors is quite stressful and exhausting! I met with my new doctor two weeks ago. She increased my pain meds to four times a day instead of three. However, she told me that if I came back and told her that if I still had pain and if I was still bedridden and not doing PT and OT, she would decrease my meds back to three doses. The additional dose is helpful but I’m still not able to get out of bed one half of the time. So now I have a quandary. I can only be honest but it’s kind of weird how she has set up this relationship between us. I feel like I’m putting a bunch energy towards how to approach my next visit with her. Feeling like a failure. Yes, it’s incredibly stressful. I appreciate how well you articulate this worrisome issue. I thank you Ellen.

Nana

I finally agree with you, Ellen.

Going to a new (or even your regular doctor) is like a big inquisition. I have just about quit going. and my medical condition is getting worse.

How do I cope? A minute at a time. I put off finding the paper with her number on it. I have only seen her once before and the whole time I was in her presence I felt so judged. Another confrontation.

This “so-called opioid epidemic” has hurt chronic (intractable) pain patients in more than one way. Taking away, tapering, whatever you call it. Oh, it it’s working.

It is making once happy (as happy as you can be when you are in so much pain) bitter and unhappy. It is adding to their lack of trust. Marriages crumbling,

It is making people who barely made it financially tip over the scales. $1000 a pill? So the check will bounce. My doctor and I agree I need it. I will figure out how to repay it later. What happened to a $10.00 co-pay? Another doctors visit? Gas money or get someone to take you? Sure. Lose another friend because most do not understand going to the doctor all the time.

They “do not have it all at the first pharmacy.” Have to go back in 3 days. Ask yet Another ride. Or they just don’t think you NEED IT. They quiz you – and not quietly – in front of other customers. Euwww. She’s drug hunting…! Then they call your doctor and demand his records. Because, of course, they know better than your studied/learned doctor.

Ohh, and those people you elected to congress?.. you know. The ones without the medical degree? They decided you only need 3 or 7 pills then must go back every few days. After major surgery! Legal medical laws made by uneducated politicians. Good. People say things like “study and go into the booth armed with knowledge. DO NOT PUT THESE PEOPLE BACK IN OFFICE.

It is making moral, Christian, happy people who are normal but for their pain inducing “thing” that they did not ask for reconsider “normal.”

Show of hands. How many CPP asked to be ill? I sure did not.